When Work Doesn’t Work Out

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When your mental illness shows up and knocks you off of your new found high. The pieces are scattered all over the ground, and you are on your knees with your arms outstretched reaching for the broken fragments of your life knowing you have to rebuild for the umpteenth time and wondering where you will find the strength or desire.

Taking my Schizophrenia Back to Work

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I started my new job as an usher for live performances on Halloween. I have seen the first half of the musical Wicked eight times since then. I can not get the songs out of my head. At my polling place this morning as I was waiting in line to vote, I was singing some of the songs to my husband and people around us started to laugh. I had to tell them what my job is and that the only music I have listened to in the past two weeks is from the production. Several of the people had seen the show and others want to.

Ushering is my second job outside of writing that I have held in eight years. I worked for a day at an Amazon Warehouse, but that turned out not to be a place I could keep my symptoms at a minimum. This new job is stressful only in that I have to learn two theater’s seating charts, and one of the theaters seats almost three thousand people.

I know that sounds easy, but it isn’t easy at first, it is complicated. Each shift gets better because for instance now I am confident that the right side of the house is all even seats and the left side of the house are all odd seats. It seems simple, doesn’t it? I don’t find it simple, at least not yet. There are eight different sections to the theater, and each section has its own set of numbering. UGH! After a month, I am sure it will be second nature. It is just this first month that has me stress sweating every time I go to work because I want to do everything right and fear to make a big mistake.

Of course, I love dealing with the public. Customer service is something I have always enjoyed and the more confident I feel about the location of seats, the better customer service I can provide. I like to greet people, and chit-chat with them. I know that sounds strange because only a few weeks ago, I was writing about isolating socially. Well, for years, I did isolate socially, but now I am in the middle of the crowd smiling, laughing and talking.

I have worked hard these past seven days. I even worked three days of double shifts. I didn’t realize what I was signing up for at first, so November is more difficult than any month going forward. It is hard, and I probably won’t get a lot of writing done, but by the end of November, I should be completely familiar with the larger of the two theaters (the only one I have worked in), and that should make the job so much easier and fun. Because let’s face it, working for a theater is a fun job!

Even though I have been writing for the past few years, that is not at all the same as having a job with supervisors, co-workers, customers, etc. I answer to editors when I have an article or essay due, but for me, that isn’t every day. Also, with writing everything is online by e-mail. At my new job, I have to wear a uniform (instead of pajamas), put on make-up, take a shower, talk to people, clock in, do what is expected of me, smile, be pleasant, take direction, work as a part of a team, handle situations as they arise. And learn new information every day and adjust to that information.

There is one other huge difference between working at home and working outside of the home, my symptoms (except anxiety) are less. Of course, my anxiety is high because I am new and I am a perfectionist when it comes to jobs and school, but beyond anxiety, my symptoms of schizophrenia are less.

It turns out challenging myself and trying to reverse the damage this illness causes to the brain is a good strategy. Lack of motivation? Find an environment where you are accountable and expected to accomplish things. Isolating socially? Force yourself to be in the midst of thousands of people where you are required to laugh, talk and engage.

I know that not everyone with schizophrenia could handle a job with so much customer contact, just like I can’t do equations like John Nash, or practice law and be a professor like Elyn Saks. We are not all capable of the same things even though we have the same disease. I will say that I wish I could start a program to get all people with schizophrenia working. The jobs would be different for everyone, but I believe the benefits would be the same: an increase in self-esteem, an increase in independence, and possibly the reversal of some of the symptoms of an illness that can take so much from you.

I did cry at work once this past week because I felt overwhelmed by not being able to answer everyone’s questions and being slow to figure out where people’s seats were, but it was only once and only a little (no tears rolled down my cheeks, they stayed in my eyes).

Despite the crying, the gains from this past week are huge. After a few more weeks, I think I am going to love my job, and I will most likely be stronger, more confident, more capable, more resilient, more productive, more cultured (from seeing so many shows), healthier and happier.

Whoever said an honest day’s work is good for the soul was on to something, possibly something significant regarding schizophrenia. I have needed time to heal, rest, and be in a stress-free environment, but now, working seems like medicine the doctors forgot to prescribe me.

Who has the Authority to Write About Mental Illness?

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I came out publicly (including family and friends) with my diagnosis three or four years ago. Since that time, I have fought very hard to try and show people with schizophrenia living lives that are similar to those without the illness. I have fought to make people like me seen as friends, partners, sisters, brothers, daughter, sons, aunts, uncles, parents, etc. And I still think we need more people with schizophrenia writing these stories. The stories of a successful life despite a severe mental illness.

I had something happen to me the other day that broadened my view and made me feel guilty, sad, and like I wasn’t telling the whole story. I met a mother online whose son’s life is nothing like mine.  Many times I have written about the mentally ill who are homeless or in prison but rarely do I write about those with schizophrenia, or schizoaffective disorder who can’t live alone, who are medication resistant, or who never get to the point of managing their symptoms.

It isn’t that I was unaware of people who need more care like inpatient treatment or a group home. I am constantly aware of that because I have a cousin who currently requires that level of treatment. But I was fighting. Fighting for stories of success, fighting for stories of hope, and fighting for stories that I rarely heard, read, or saw in books, movies, or television.

There were many times when I was frustrated by parents and adult children for writing the stories about the illness and leaving those of us with the actual illness without a voice, or way of telling a different narrative. I realize now, that there is room, if we allow it, for all of the narratives about mental illness. There is room for us to talk and hear from those in prison, there is room for us to hear from those on the street, there is room for us to hear from the children of someone with a brain disease, and there is room for mothers, fathers, sisters, and brothers to tell their stories.

All of these stories matter and can help improve our understanding of schizophrenia, schizoaffective disorder, bipolar disorder and other illnesses that impact an individual and the ones who love them. I only hope that with so many people writing about the tragedy of mental illness that stories like mine and stories like other people I know won’t get lost, or not be as valuable (because they don’t fall into our comfort zone or understanding).

I hope along with the stories of sadness, pain, struggle, and grief that stories of hope and possibility continue to find space in popular culture. For years, the heartbreaking stories have captured our imaginations and driven the cultural response; I only hope that we continue to make room for the voices of those who have lived experience because like a kaleidoscope with one blacked out spot, the view is not complete, or as colorful, or as interesting without seeing the whole picture.

A Terrified Warrior? You Bet

Well, I am doing it, and it feels great. I am going back to work. I’m not returning to my life as a social worker, or as a marketing coordinator or any of the other more professional jobs, I have had throughout my life. I can’t handle much stress or office politics, etc. In other words, my illness has progressed to a point where a nine to five job is impossible.

I don’t think everything is impossible, though. I accepted a part-time, service industry job that pays just above our minimum wage, but I am happy. I am happy because I believe it will force me to address some of my most persistent symptoms like lack of motivation, social isolation, and anxiety.

Am I scared that I will fail? Yes, but I am also excited to be entering the world again. I am also thrilled that I will have some money to back a few projects that I really want to start. I have been paying for some marketing for my guided journal/workbook that I wrote to help people gain self-confidence, spark creativity, and increase coping skills. (It is available here if you are interested).

I am also working on a writing project/workbook with one friend and a magazine for middle-aged women with another friend. I like to joke that my first three paychecks are already spent.

From all the stuff I am trying to put together, you can probably tell that I am trying hard to get back on my feet, and make a decent living as well as create, contribute, find meaning, network, socialize, and do the most I am capable of (which I’m not sure of right now). I know I can’t work a nine to five job like before, but can I work a part-time job and run an internet magazine? I don’t know, but I am going to try.

How do I feel as I embark on this new journey? Terrified, exhilarated, alive, hopeful, and everything in between. Against all the odds, I am trying to rewire my brain and beat some of the symptoms of schizophrenia and anxiety (along with medication, and all the other treatments I receive/participate in).

People often tell me I am brave for telling my story. I have never felt brave for writing about my life, but right now, I feel strong and determined, and I know I have a spirit that doesn’t give up easily. For the first time in my life, I feel like a fighter, and it feels good.

Please send all the warrior vibes you can muster, my first shift is in a few days, and I’m going to need all the tricks, tools, and arrows I can carry.

Can Anything Good Come From Chronic Illness? Yes, for Some, Perspective

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I received an updated diagnosis from my psychiatrist. My current diagnosis is Chronic Paranoid Schizophrenia and Generalized Anxiety Disorder. I also have diverticulitis and have had to change my diet over the last two years to avoid surgery. I am going through perimenopause and have hot flashes and disturbed sleep. Lastly, I have masses that keep forming in my breasts that require testing, and for one year, I thought I had breast cancer (each time I have a new mass that is a possibility). This list doesn’t even cover the side effects of antipsychotic medication which are high cholesterol, high blood pressure, high blood sugar, and possible liver damage to name a few.

When I read that paragraph and think of all I do to try to live a healthy life, health for me is a full-time job. How much I sleep, and when and what I eat, how regularly I use the bathroom. Then there is making sure I exercise, making regular doctor appointments, having my blood checked regularly, getting mammograms every six months (or sooner if a mass grows), taking my medications twice a day, learning mindfulness exercises, and writing in guided journals that address happiness, gratitude, spirituality, health, etc. I am sure I am leaving out many details of care here.

I don’t believe that everyone can make all the changes and do all the things I do to remain healthy, and I don’t believe everyone, even if they did all these things, would be healthy (I’m not 100% healthy, some of my numbers are borderline). I’m not blaming people who have worse outcomes than me, for their level of illness – not at all. I think people can do everything right and still end up with psychosis, diabetes, cancer, surgery from diverticulitis, high blood pressure, high cholesterol, and many other illnesses. No one is immune from illness or poor health even though so many people would like to believe that it is all in their control because it makes them feel safe.

All I am trying to show by writing down what I deal with is that it isn’t easy to manage schizophrenia, or generalized anxiety or any health issue. Having to watch everything you eat, and having to eat at certain times, trying to get exercise most days, all of that stuff is hard. I wouldn’t be surprised if many people, especially those experiencing so many of the symptoms of mental illness (like depression, lack of motivation, etc.), are incapable of doing all or even half of the things necessary.

There is something else, though. In my latest note from my psychiatrist, he said, “Rebecca has wonderful skills and a positive attitude.” I almost cried when I read that. And I know it is true because despite how hard it is to try to stay well, I am so happy that I get this chance. I am so thankful, grateful, and in awe that I am alive.

On bad days, I feel a little sorry for myself, but most days, most days, I am full of gratitude to see the moon, the stars, feel the breeze and to know what it is like to be loved, and that is just the beginning of my thankfulness. I am thankful that I have food on the table, that I know how to read and write, and that I can come up with ideas to share with people. I could go on for pages, and pages and days and days about the things and people I am grateful to have in my life.

Is chronic schizophrenia hard to live with? Yes, all illness is hard to live with, but is my life worth living, and something I want to continue until I am old and gray (well, I am already almost all gray)? Yes. I want to see thirty more summers, thirty more winters, thirty more falls, and spring, yes, spring!

It’s hard. It’s tough. It’s demanding. It is difficult. But it is beautiful beyond measure and I wouldn’t change my life with anyone because no one is immune from hardship. It is my life, and I believe I only get one, so I will gladly live it, illness and all.

To Older Siblings Everywhere

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Do you ever think about your childhood and what your life was like then? I am decades away from living in the pink house, across the street from an elementary school, where I spent seven of my childhood years (from age 3 to 10).

I think about that time, with a chicken coop out back full of hens and a rooster or two; the garden that provided us with almost all of our vegetables and enough cucumbers, green beans, cauliflower, and carrots for many dinners and pickling. There were the apple trees, plum tree, and apricot trees, and a patch of strawberries and rhubarb. I’ll never forget picking tomatoes out of the garden and biting into them as the juice made a path across my dirt covered face.

It isn’t the fresh food I remember most, though or the smell of lilacs that wafted through the yard in spring. What I remember most is life with my three older brothers. I remember the times I was allowed to play with them or tag along with them, and the times I was told, no and was left behind.

Today, my oldest brother, Joel, turns sixty and it is his birthday that has me wandering back to the house where we all lived together under one roof. A house where the walls and floors and paint and furniture held our laughter, our secrets, our dreams, and our tears. At times blood tied us together, and at times life, anger and choices tore us apart.

My brother Joel had a pet mouse, a pet rat, pet snakes, played baseball as a catcher, and kept more than a dozen Reese’s Peanut Butter Cups in the freezer and instructed his younger siblings not to touch that chocolate.

I looked up to my oldest brother, and I listened to him. Listening to Joel was a problem, though because he liked to tell stories. Stories weren’t for lying, although he occasionally received a spanking for that, his stories were made up to entertain himself and anyone else who would listen. I was always a willing audience.

Joel once sent me to school with a bottle of mouthwash (I didn’t know what it was) and told me to drink it for superpowers like running faster or jump roping longer. He told me it was “White Lightning,” a magic potion. You can imagine how well my bottle of white lightning went over with my teachers in elementary school.

At school for show-and-tell, we were instructed to bring things from home that started with the letter, B. Joel went through our whole house and collected everything from baseballs, books, batteries, brushes, etc. and sent me to school with bags full of things that started with a B. I brought at least ten times the number of items of any other kid.

Another time for show-and-tell, Joel sent me to school with a record by Shel Silverstein. He wanted me to share the song, “Sarah, Cynthia, Silvia Stout.” It is a song about a girl who will not take the garbage out. The song is very funny, and my class loved it and wanted to hear the other songs on the record. Well, some of the other songs, contain adult language and themes and once again, I upset the elementary school teachers.

Having older siblings almost ensures that you will know things teachers don’t think are age appropriate. That means getting in trouble for being “ahead of the class” in things like anatomy and sex.

When our time in the pink house came to an end, and my parents went different ways, my brother Joel stepped in and took care of all of us in ways he was too young to do. At night before bed, he would drive my brother, Andrew, and I out to the neighboring town so we could see our mom at her waitressing job and she could kiss us before he took us home and put us to bed.

There are a thousand other memories; feelings, images, familiar smells, favorite foods, least favorite foods that bring back the time we shared under one roof. Good times and bad times. Happy times and hard times. But in the end, there is nothing quite like having an older brother.

Halloween and Schizophrenia From Stereotypes and Stigma to Candy

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I love October it is the first month after summer where days start to get cooler, nights longer and there are all of those great flavors like pumpkin, cinnamon, nutmeg, and maple. As a kid, October held one of my favorite days at the end of the month, Halloween. But that was long before I had the diagnosis of schizophrenia.

Now Halloween marks the most stigmatizing and stereotyping day of the year for people with a severe mental illness. There are straightjacket costumes, the horror films, the haunted asylums, and many other cultural favorites that make it look like those of us with a mental illness are terrifying, monstrous, and the places we go for treatment are houses of horror.

People have become more and more aware of how costumes, mascots, names, etc. are offensive to certain groups over the years. Look at the campaigns to get the Red Skins to change their name, and the pushback on Hollywood to hire transgender actors to play transgender roles as well as Asian actors and other POC to play roles intended for them. All good, every bit of it.

Many groups have experienced a tide of change about their identities, but that wave has not included severe mental illness. There has been a great deal of public acceptance of anxiety and depression, those two disorders have made it into the mainstream in ways schizophrenia has not. I have seen little shift in public awareness or acceptance of schizophrenia, especially in October.

There is hope, though with movies like Netflix’s Maniac, where the main character has schizophrenia and displays many symptoms, but isn’t a monster, a criminal, or even unlikeable. That is a huge change from the stereotypes on many crime shows that write in the killer as someone with schizophrenia.

The history of psychiatric facilities as places that tortured patients with treatments like lobotomies, ice baths, insulin shock therapy, and other stuff of nightmares, almost cements psychiatric facilities with a role on Halloween. The boarded up closed up, and long unused asylums that dot our countryside don’t help as many people and television shows report tales of ghosts and other haunting stories.

I don’t hate Halloween, though. On the bright side, at least it is a night that involves candy, and who doesn’t want to celebrate pillowcases, and plastic pumpkins packed full of sugary treats, especially candy bars that are full-size.

 

 

Giveaway: Journal/Workbook

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I received my author copies, and I want to pass a couple of them on to you! Like this post and comment for a random chance at winning one of two copies. I will pay for shipping.

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“…talking Away. I Don’t Know What I’m to say. I’ll say it Anyway” Lyrics from a-ha

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I’ve spent much more time out in public lately, and I have noticed that I enjoy talking to strangers. I usually start up conversations with servers in restaurants, and with cashiers in coffee shops and grocery stores. I frequently say something self-deprecating or humorous in another way, to start up a little back and forth.

Yesterday, my husband and I went to four museums by our house, and we talked to people viewing art, people working the doors, and as usual, I complimented a few women on their outfits as we passed them walking through the park.

Years ago, I noticed that my dad would talk to everyone he encountered and I found it annoying. Now, I’m just like him. I like talking to people. I especially like it when we share a laugh, a few smiles, or impart some information to each other like a favorite place to shop for sales, etc.

These interactions with people are like little fuel charges in my day. They don’t take energy; they give energy. Unlike how I feel about most social media. So many of the writers I am friends frequently encourage me (and others) to find “your community” “seek out your community” “rely on your community” “build your community,” but the writing communities and communities for women are less than supportive.

Some of the women writing communities I belong to have a call out culture of shame and humiliation if someone makes a mistake regarding a social justice issue. I don’t know how all of us are supposed to learn the ever-changing language, norms, preferences, etc. of different groups if we don’t learn it from somewhere and that learning can mean making mistakes.

It has to be okay to make mistakes without calling the person’s intelligence, character, intentions, etc. into question. I don’t know everything about the LGBTQA community or racism, and I am willing to bet that the people who try to make others look bad so they can look virtuous and knowledgeable and “above it all” don’t know everything about the mental health community. For instance, I bet they don’t know what those of us with a mental illness find offensive, degrading, stigmatizing, etc. Yet, I don’t try to shame people who make mistakes.

Other communities of women are supportive of you only if you have social capital. In other words, if you are a well-known writer, you will get hundreds, possibly thousands, of likes on anything you post, no matter how mundane. But if you are not well known, or don’t have contacts, or something that others feel they want to be a part of you might get one like or two likes and those come mostly from people who know you in real life.

So these communities that we are often told to seek out, join in, get support from are often not welcoming or supportive at all. I have found the same to be true of the mental health community. You would think that I would be a natural fit in the communities based on mental health. I write about severe mental illness; I have lived experience, I put myself and my story out there as an activist.

In the mental health communities, I find that the same hierarchies exist regarding social capital. I also find that in many of the communities, it seems like it is just people looking for attention. They don’t want to start real conversations or help each other to move up, move beyond, challenge, live better, etc. Frequently it is about someone posting a picture (I see this at least twice a day) with the caption, “Everyone says, I am ugly, do you think I am ugly?” Of course, it will be a photo of a young woman in her early twenties that is attractive. I can’t say that no one has ever called these young people ugly, but I can say that this happens so frequently it just looks like a way to get attention and hear people say positive things. Which, I have to admit is sad and possibly does belong in a mental health group. I don’t know.

But for whatever reason, this “find your community” mantra that so many people suggest, espouse, and recommend to others trying to find support, friendship, camaraderie, etc. doesn’t often work, and people are frequently left feeling more socially isolated and alone than they did before. I know I do. I belong to a dozen groups online and don’t feel real support from any of them.

I do, however, feel real happiness from interacting with people in real life. Of course, I love having lunch with friends; I think I am going to love my new part-time job (working with the public) and I like talking to strangers even if I only encounter them for a few short minutes.

If your social media life leaves you feeling hollow, lost, lonely and isolated, know that you are not alone. I feel that way almost every day when I try to reach out. It doesn’t surprise me that anxiety disorders have skyrocketed in this country. When you judge your writing, your creativity, your problems or whatever you post by the number of likes you receive (support you receive) or when people try to shame you for not knowing the latest changes in the world of social justice, you can end up feeling depressed and isolated, misunderstood or not seen or heard.

If that happens to you, try going to the grocery store and ask the cashier what the best kind of ice cream is. They may not know, but they may give you a recommendation that makes binge-watching old episodes of Golden Girls or MASH a Saturday night celebration. In any case, you will have started a conversation and those small conversations, the little ones throughout the day can revive you, lift you, carry you through the downfalls of what people thought would connect the world and open us up to each other in life-changing ways. The experiment of social media has failed to bring us together, people are more lonely and isolated and divided than ever. I’m relying more heavily on the old-fashioned version of social media – talking, and I’ve already discovered two new kinds of ice cream, and that is just the beginning of the benefits.

Forgetting Your Mental Health Might be the Best Thing for your Mental Health

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For the past few years, I have considered myself an advocate for the mentally ill. My advocacy corresponds with my coming out publically with my diagnosis after almost two decades of hiding it.

The problem with focusing on advocacy, writing dozens of articles, writing a blog, and doing many interviews about life with schizophrenia is that having a severe mental illness became my primary identity. Meaning, I focused a good deal of my time on having a brain disease.

I have written over and over again about how I am a wife, daughter, sister, friend, cousin, niece, aunt, writer, etc. and that I have many identities that have nothing to do with having schizophrenia. Although I wrote those words over and over again and said them in interviews just as many times, I wasn’t living that way. I was spending the majority of my time on things that were directly related to my illness.

I have seen many people (way too many to count) who receive a mental health diagnosis become advocates. It seems to be a way to try and make something positive out of something challenging, devastating, difficult, hard, and even at times, humiliating (because of stigma and stereotypes). I think advocacy is fantastic and I am glad that both family members and those with a brain disease are active in this work, but focusing on one aspect of your life especially one that can be as difficult as a severe mental illness is not good for mental health!

Doesn’t that last sentence sound ironic? Focusing too heavily on your mental health or diagnosis is not good for your health. For that reason, I am starting a blog (I’m keeping this one, too) that has nothing to do with the world of mental health (I hope to monetize that blog and make it a small business), and I am going to work part-time outside of the home in a job that is customer focused.

I don’t intend to give up my work as an advocate; I simply plan to start living a more full and varied life. At first I plan to work up to not thinking about schizophrenia for a few hours, and hopefully, after time, whole days will slip by where I don’t think about the world of psychiatry, mental health, stereotypes, stigma, or the world that consists under the branch of mental health.

Because let’s be real, what can be healthier than living such a great life that you forget you have a disease? Ignoring your mental health can be the best thing you do for your mental health. Riddle me this Batman.